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Topic: Dealing with Glaucoma in UK  (Read 2363 times)

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Dealing with Glaucoma in UK
« on: June 03, 2022, 06:10:37 PM »
Hello All, We (a family of three) are moving to london this August from USA. I have narrow angle Glaucoma and am being treated for it since i got diagnosed back in 2016.

I have heard some horror stories of planned procedures/surgeries getting delayed in UK. Is this true? If the doc finds out I need a cataract or some eye procedure to deal with increasing pressure, would i be put on a long wait list?

Also how different is the treatment and wait-list if i go directly to a private hospital like Moorfields?

Any inputs regarding this would be really helpful.

Thanks
Girish


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Re: Dealing with Glaucoma in UK
« Reply #1 on: June 06, 2022, 09:00:49 AM »
My husband has narrow angle glaucoma, and has been seen on a regular basis since diagnosis. I suspect timing may vary with location, but we have had no issues at all.

He had cataract surgery before the pandemic, but has had a follow-up procedure since which was scheduled in rapid time after referral by the optometrist.
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Re: Dealing with Glaucoma in UK
« Reply #2 on: June 06, 2022, 10:43:52 AM »
There is some scaremongering around wait times, yet the statistics CAN be true. But if life saving or urgent, it’s unlikely to be a long wait. 

Private will always help you to skip the queue, but do be aware that for some services skipping the queue can still be a wait of a few months. Allllllll depends on your postcode. Waits will be entirely dependent on supply and demand in your area. If doctors and hospitals aren’t saturated with the same request, you shouldn’t have too much trouble with the NHS.

I think it’s safe to say that mental health is where the NHS is on it’s knees right now.


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Re: Dealing with Glaucoma in UK
« Reply #3 on: June 08, 2022, 08:21:58 AM »
Just FYI, Moorfields is not a private hospital.  I've been to the NHS emergency room there and received excellent service.  I really can't comment on your specific issues, but overall the NHS has been pretty good for me and my family. Good luck with your move.


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Re: Dealing with Glaucoma in UK
« Reply #4 on: June 08, 2022, 08:26:42 AM »


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Re: Dealing with Glaucoma in UK
« Reply #5 on: June 09, 2022, 09:17:21 PM »
You may want to look up a charity for glaucoma and get specific advice, because it may be like other things where it's a post code and GP practice lottery. If you can afford private care you'll be fine, but if you can't research as much as you can. I am now so disabled I can't live independently thanks to the NHS so I would not move here if given the choice again, but glaucoma is a specific condition with well documented treatments so they likely have good pathways for it.


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Re: Dealing with Glaucoma in UK
« Reply #6 on: June 09, 2022, 10:10:47 PM »
I would agree. It's a postcode lottery.

I went to a GP with chest pains. She put me down as an "urgent" referral. I was seen six weeks later at the cardiac clinic. Thank goodness it wasn't actually a heart attack!  My daughter went to a GP three separate times a worsening UTI and was told to drink more water. A kidney infection resulted. THEN she got antibiotics.

So yeah, do your due diligence. Be aware that the NHS is restricted to specific drugs and treatments - even if they don't work for you, that's all you'll be offered unless you go private. Even if there is something you know will work (because you've had to deal with it previously and used that other option).

Best of luck!


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Re: Dealing with Glaucoma in UK
« Reply #7 on: June 29, 2022, 05:45:15 AM »
Thank you all so much, I was not expecting so many helpful responses. Really appreciate your responses. We are glad we found this forum to fall back on when we have some concerns about our move to UK.

We are moving to UK in late august, after having stayed in the states for close to 2 decades.

My husband has narrow angle glaucoma, and has been seen on a regular basis since diagnosis. I suspect timing may vary with location, but we have had no issues at all.

He had cataract surgery before the pandemic, but has had a follow-up procedure since which was scheduled in rapid time after referral by the optometrist.

@vadio this sounded so much like my situation. I have narrow angle glaucoma and had cataract right before pandemic as well :). Doesnt your husband have a regular Galucoma specialist he sees on regular basis?

@Nan D. and @KFdancer could you please tell me how service can depend on postcode? If i stay in Kingston (thats where we are planning to stay) can i not visit NHS in Kent for eg?

Thanks all again!



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Re: Dealing with Glaucoma in UK
« Reply #8 on: June 29, 2022, 08:41:53 AM »
I live in Twickenham, right next to Kingston, so if you've got any specific questions I can try to help out.  I really know little about the NHS so try not to comment, but what about getting a job with private cover?  I've got it but haven't used it yet. 


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Re: Dealing with Glaucoma in UK
« Reply #9 on: June 29, 2022, 10:03:45 AM »
You have the right to get NHS treatment outside of your area so don't be afraid to ask.  I have a friend here who has had a number of eye surgeries in the last 5 years such as a retina peel, 2 cataract surgeries and laser treatment to clear a cloudy lens.  He has never had any of those treatments at the eye center in our local hospital. I have driven him 20 and 40 miles to receive those treatments at NHS hospitals in neighboring counties.

We signed up for private insurance when we moved back in 2017 and my wife has had both of her cataract surgeries done privately.
Dual USC/UKC living in the UK since May 2016


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Re: Dealing with Glaucoma in UK
« Reply #10 on: June 29, 2022, 10:43:04 AM »
I live in Twickenham, right next to Kingston, so if you've got any specific questions I can try to help out.  I really know little about the NHS so try not to comment, but what about getting a job with private cover?  I've got it but haven't used it yet.
Private cover doesn't provide anything for pre existing conditions except to get you back to the baseline when you signed up to the service. But it is worth having for when new conditions occur.

For the OP - the NHS has a right to choose your specialist and be referred for care outside of your area, but it just depends on the condition whether they also require tertiary referrals to go out of area (and that's where the post code lottery comes in). I think for glaucoma they will have a very good care pathway because that's the type of thing the NHS is very good at, but a glaucoma charity would definitely be able to provide you more specific information about what to expect and how to best advocate for yourself. 


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Re: Dealing with Glaucoma in UK
« Reply #11 on: June 29, 2022, 07:12:15 PM »
Basically, just don’t live in my postcode and you are fine.  ;D

Some examples, we had to pay privately for my husband to have a vasectomy.  Most parts of the U.K., vasectomies are covered on the NHS.  Not so in my area.

I got the super scary phone call when pregnant with number 2 that they thought baby was not okay.  I could have waited to have amnio or had CVS straight away on the NHS.  Both bringing great risk to the pregnancy. I opted for a non-invasive blood test which carried no risk to the pregnancy but was considered highly accurate, which was £1,000 out of pocket.  Other areas offer NIPT on the NHS.   Baby was fine by the way!  He's 5 now.   ;D

We’ve gone private for anything and everything with ours kids (anything beyond normal walk-in clinic stuff), just to skip the queue.  Once we’ve had a diagnosis, they refer us back to the NHS for continuity of care.

There are LOADS of examples of where something is covered on the NHS in one place, but not another.

I’ll be honest, I have spent a LOT more on healthcare here than I did in the USA.  I also haven’t lived in the USA for well over a decade and am aware that it is not the same place I left. I am SUPER GLAD that the NHS exists and that my children are being taught that doesn’t matter if you are homeless or a millionaire, you will receive care.  Lose your job?  It’s okay, you don’t have to worry about basic healthcare.

I’ll also warn that you have to SERIOUSLY advocate for yourself here. You have to be the assertive pushy American.

I’ll stay off my dermatology soapbox for today.  ;D

« Last Edit: June 30, 2022, 09:16:34 AM by KFdancer »


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Re: Dealing with Glaucoma in UK
« Reply #12 on: June 29, 2022, 11:10:03 PM »
Thank you all so much, I was not expecting so many helpful responses. Really appreciate your responses. We are glad we found this forum to fall back on when we have some concerns about our move to UK.
 
~snip~

@Nan D. and @KFdancer could you please tell me how service can depend on postcode? If i stay in Kingston (thats where we are planning to stay) can i not visit NHS in Kent for eg?

Thanks all again!

Well, there's this:  When I was in Glasgow, if I wanted medical help I would phone to make an appointment with my GP in the given phone-in hours every morning. (This was pre-pandemic. During the pandemic the doctors offices all closed.)  Once in to see the GP, which could take a wait of several days,  but not usually a terribly long time, any referrals to specialists could take months. (Chest pains. Yep. Close to two months. And that was after being flagged as "urgent".)  If a prescription was to be written I would have to walk or take a cab home from the GP. Then walk (or take a cab) back to the GP the next day to get the paper prescription (which would not be written while I was there the first time) and walk/cab it to the pharmacy. Said pharmacy would then either dispense it if it was something like Naproxen that they had on the shelf, or - more likely - it would be sent to their main pharmacy where they did all the actual medication dispensing work, and then shipped back to my local pharmacy. Who I could call and then cab/walk to in about 48 hours if the prescription was ready. Then walk/cab back home. Not too great when you're really "poorly" at all.   :(   

I asked, and was told we should only be registered with a GP in our postcode. The first office refused to take us on their roster because  we were both American and Irish, and not Scottish with a work history. They kept insisting that we had to have a work history or pay the requisite fee to the government as we were foreigners. In Scotland, if you live in the country with the intent that you will remain permanently, you are entitled to medical care regardless of your prior work history there. And, if memory serves (and it's getting fuzzy now), as EU, we should have not had to pay any more than a citizen paid for care.  Things have, of course, changed with Brexit.  I believe that' was never the case in England, where a fee was always required until you had the UK equivalent of a greencard or citizenship? Neither here nor there at this point for you, though!  We were directed to the alternate GP by the Scottish government office that handles such things, and filed a formal complaint against the first office (who should have, we were told, at least taken us on as visitors, and who should have provided their refusal in writing, rather than refusing to accept our applications completely).

If the GP wanted any lab tests other than doing a urine dipstick or a finger stick to check for anemia, it involved an appointment at another NHS facility - that did involve a cab ride because when we were sick enough for testing, a three-mile-each-way walk was too much. They had no facility to process anything - even to send it out to a lab for processing - at the GP office. I think some other GPs in town may have at least had someone who could do a blood draw, but we could not use them.

And there is:  If we had been in a different postal code, the available medications on the NHS might be different from what was available in our "home" postal code. Medication the daughter was able to get with no problems at all when living in a different postal code were denied to her by the GP in the one we lived in when we were both in the country. We never sorted out if it was just that the doctor didn't want to go over whatever quota for the medication that office had, or....? Same patient, same documented condition, same presentation for care. Very different outcomes in different postal codes.  (I'm leaning toward thinking it was the clinic budget determining what she was prescribed.)

And there's this:  If we were seriously ill, because of our postal code we would be sent to what we nicknamed "The Death Star" - a brand-new mega hospital that has had an unusually high death rate in children that was traced back to either the pigeon droppings in the air conditioning system or the bacteria in the water system, and then hushed up. That there were pigeon droppings or problems with the water in a HOSPITAL was horrifying enough, but in a brand new facility it was exponentially more off-putting. And then the cover-up, well that's par for the course in the NHS, it seems. Sadly.  If we  were in the next postal code over, we would have been sent to a different, much older but ecologically sound facility. (I did ask and was told it was not an option because of my address.) No bird poop, no toxic water over there....

I never sorted ambulances out. I don't think the NHS runs them. But it can take literally hours for one to show up - even if you're laying in the street with a gaping head wound spurting blood. Not always, but that sort of thing happened often enough while we were there that we discussed contingency plans if we ever needed for one of us to get emergency care.

You do have to remember that the NHS in Scotland is a different organization than the NHS in England, Wales, or NI.

If you can afford it, go private. Seriously.
« Last Edit: June 30, 2022, 02:29:37 AM by Nan D. »


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Re: Dealing with Glaucoma in UK
« Reply #13 on: June 30, 2022, 01:06:03 PM »
It does all depend on your postcode and your GP's surgery.  I'm in Scotland, but a far different area where Nan was.  I get prescriptions right away and my GP's take blood from me (though it does to the hospital labs for processing).  Waiting lists area a hot mess right now though thanks to Covid. 

You may want to look up a charity for glaucoma and get specific advice

Yes, this.  These are a good place to start:
https://glaucoma.uk/
https://www.rnib.org.uk/eye-health/eye-conditions/glaucoma
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Re: Dealing with Glaucoma in UK
« Reply #14 on: June 30, 2022, 01:55:03 PM »
Same as PB, my GP does most things in the office.  Prescriptions printed there and then to take away or sent electronically to my chosen pharmacy (I do repeat prescriptions through Pharmacy2u which is posted free to your door.  They do blood draws and all sorts of other things you would be used to in the office. 

Also BECAUSE of covid, nearly everything can be dealt with on video calls now.  SO CONVENIENT!  They will have you in if you have something that NEEDS to be seen in person, but the convenience of not having to go to the doctors office (called surgeries here) to say "all good, no change since last visit" is amazing.

And my FAVOURITE bit?  YOU NEVER HAVE TO WAIT.  The doctors actually run ON TIME here.  Your appointment is at 3pm?  Guess when you'll be called back.  3pm.  You'll be on your way by 3:15.  No paperwork.  In, out, on with life.  And we do NOT pay at the point of service.  And we don't have to wait.  It's amazing. 


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